Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day".

Barth Syndrome Awareness Day would designate April 5, 2026 to raise public awareness of Barth syndrome, a rare, life-threatening genetic disorder that primarily affects males. The resolution describes the TAFAZZIN gene mutation and multisystem effects including heart and skeletal muscle problems, low neutrophils, and growth delays. It highlights very low incidence with fewer than 160 U.S. diagnoses and about 300 worldwide, high childhood mortality, no FDA-approved treatment for children under 30 kilograms, and a single dedicated U.S. clinic at Kennedy Krieger. It would call for better awareness, earlier diagnosis, more research, development of treatments and diagnostics, and clearer regulatory pathways for ultrarare diseases.